My daughter is 17 months old has short bowel and is currenly on TPN 3 nights a week and hydration 4 nights a week. She receives 46cc per hr enterally, she is able to eat food and she was eating a small amt. here and there, I took her to a feeding "team" and they were no help, Does anyone know how to get these kids with SBS to eat by mouth, I know other peoples children with this eat I just don't know how they got them there, I do all the things your supposed to, and she just throws the food on the floor or cries, and as I said she was eating small amts just 2months ago, she is getting alot of teeth right now and has a high palate, but is not aversive to putting anything in her mouth, except food. If books had nutrional value and calories I'd be all set. Does anyone know or have any suggestions as to how I can get her to eat? She doesn't seem hungry if her enteral food is shut off for an hr or so either.
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short bowel children and eating while have enteral feeds
- By sophie517
- Posted October 12, 2009 at 8:43 pm · 6 replies
- In Home tube feeding (HEN, enteral nutrition)
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- By MomToCaleb
- Posted October 13, 2009 at 10:39 am
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I'm so glad yu posted this and look forward to reading the replies as we're having the same issues. Good luck!
- By dreamlady1931
- Posted October 13, 2009 at 5:41 pm
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I am an adult who acquired SBS at the age of 50. So, tho i have no first hand info, i belong to a list that has a lot of parents with children who have SBS. If you are not part of that group, you might want to check out Yahoo Groups and look for Short_Bowel_Syndrome.
Good luck.
Mary
- By mamasmith
- Posted October 20, 2009 at 1:03 pm
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Here's what I can tell you about my daughter. We saw a feeding specialist (Marjorie Meyer Palmer) many years ago. She had my daughter chew on licorice, beef jerky and a soft tube. This seemed absolutely crazy to me. For a couple of years, after chewing the food, she would spit it back out. We just continued to let her "eat" her own way so it remained a pleasant experience for her. She is now 15 years old and eats everything. She no longer has a gtube nor TPN. It was a very long and tedious road but be patient. The food has to be a pleasant experience for your child. I found my daughter would swallow what her gut could tolerate. Others may not understand your child's style of "eating" but they don't need to.
Good Luck and be patient
- By oleyfriends
- Posted October 21, 2009 at 8:55 am
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There are feeding centers that can help you with this process. Ask your physician for a referral.
There are also two videos/dvds in the Oley library that might be helpful for you to borrow:
1. Journey from Tube Feedings to Oral Feedings
2. The “Get Permission” Approach to Mealtimes and Oral Motor Treatment
Details on how the library works are posted at:
http://www.oley.org/video_dvd.html
Finally, another parent who has worked through this issue sent me an article on "Preventing and Treating Tube Dependency in Infancy and Early Childhood." It has a section on weaning from tube feeding. I'm happy to email to you/anyone who wants it. Just send an email to me at dahlr@mail.amc.edu.
Roslyn Dahl
Oley Staff Member
(800) 776-OLEY
- By sophie517
- Posted October 21, 2009 at 6:53 pm
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Thank you so much, it helps to know that it is possible. So happy for your daughter. Mine is only 17 months and I can see the dread in her eyes when I hook her up to the TPN and she is so happy to be free of her backpack for the short amts of time she get if she drinks formula. Thanks again.
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